I'm confused....why did/would an ID doc dx me with Fibro in Jan '05....when there was a recent confirmed WB dx of Lyme from August '04 right there in my records?
I was referred to him, as well as a Rhuemy (Dec '04)after my GP rx'd Doxy 100mg bid for 3 months.
I am now seeing a LLMD, but just curious as to "What was up with that?"
I even asked him...and his reply was, "Well, I think something else is going on here".
I wasn't aware of the ID docs dx until I requested my records for the LLMD, and read it before turning them over to the LLMD.
Anyone see any reasoning with that?
Thanks for any thoughts on this,
-laserred-
DLL
I would think most ID ducks don't want to admit that Lyme could go past 4 wks. Yeah, right.
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oops!
Lymetutu
But it doesn't justify antibiotic tx, of which of course he didn't rx any anyway, infact he suggested 'excercise'... 
Thanks for your reply...
-laserred-
Fibro/chronic fatigue & many other dx we have are all RELATED/CAUSED by our lyme disease that has progressed to this point in my NON-MEDICAL mind.
Fibr was diagnosed because they should have given you the tilt table test of testing all 18 tender/pressure points of your body. 11 and more are POSITIVE for FM dx.
STRETCH Excercise was mentioned as it helps our joints, tendons, ligaments, & soft tissue.
HOT Water therapy was very helpful doing the stretching in there until I became allergic to that smell...chlorine. Also, it was at this time the RASH started & has reoccured often these last 8 yrs.
Go to the site below & bring up FIBRO mimics lyme disease....read some of these articles. I think it will help you understand better; it did me anyway.
I came across this new web site of good info from Natl. Institute of Health's medline library....
covering many other dx illnesses: Alzheimer's/dementia, Parkinson's, Bell's Palsy, MS, FMS, CFS, IBS, etc. and was posted on www.lymenet.org.
300 OTHER medical condtions mimicking lyme disease w/citations and author's
name, Art Dougherty, Calif., 2001, is at bottom of site page!
http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html
Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001.
http://www.geocities.com/lymeart3/misdiag-links.html#disease
Be sure to print off Treepatrol & Tincup's combination NEWBIE LINKS, check off as you read as there are months of reading there!
Also, see Cheryl's www.lymeinfo.net's extensive web sites on LD Diagnosis, Symptoms, and Treatment:
http://www.lymeinfo.net/lymediseasetreatment.html
Betty G., Iowa
i was treated with 4 week's abx pic line.was told i was "cured".lyme symtom's continued.i asked about that.was told i now have fibro...????
i think fibro might be a big garbage can that the thing's that can't be explained,are throwen into.
anyway,you did the right thing about finding a llmd.good luck with your treatment.....gary
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quote:
Originally posted by bettyg:
Fibr was diagnosed because they should have given you the tilt table test of testing all 18 tender/pressure points of your body. 11 and more are POSITIVE for FM dx.
The tilt table test is used for testing for NMH, or neurally mediated hypotension ... and other related problems....Not for FM.
Geden.....what if that accident actually triggered your LYME not FM?
I think the drs are just guessing since it happens to alot of people. I think it's simply the Lyme being stirred up.
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oops!
Lymetutu
quote:
Originally posted by laserred:
I even asked him...and his reply was, "Well, I think something else is going on here". :
These are the EXACT WORDS that emerged from the mouth of the lyme-UN-literate doctor I first saw.
Lyme is just something that somehow seems to lie below the radar of a large part of the medical community in this country. They just don't know how to treat it, and seem to to resistant to considering the possibility of "co-infections". They've just walked away and left us in the dark.
Always question everything. You must be a part of of your medical team, I have not seen anyone get better without doing so,
DaveS
FYI MJ works very well for those suffering with this condition
But call me 'dumb' but I guess I still don't know...just like you, 'LYMETOO',[ "The jury is still out on whether I have Lyme and FM or Lyme IS FM. Probably Lyme IS FM."]
But Thanks again to all for all your good info...
brentb ...what's MJ???
quote:
Originally posted by laserred:
brentb ...what's MJ???
Mary Jane
Fibromyalgia
Fibromyalgia-associated Hepatitis C Virus Infection, J Rivera, A De Degio, M Trinchet, AG Monforte, Br J Rheum, 1997; 36:9; 981-985.
Mycoplasmal Infections and Chronic Fatigue Illness (Gulf War Illness) Associated with Deployment to Operation Desert Storm, GL Nicholson, NL Nicholson, M Nasralla, Int J Med, 1997 (in press)
New Treatments for Chronic Infections Found in CFS, Fibromyalgia Syndrome and Gulf War Illness, GL Nicholson, Environmental Phys, Fall 1997, 13-14.
Many more studies... http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/78.html
It may not be Lyme causing it but something imo sure as heck is. IV silver hydrosol should (in theory) take care of it whether it's viral or bacterial. good luck.
quote:
Originally posted by laserred:
Hi Everyone,I'm confused....why did/would an [b]Problem hereID doc dx me with Fibro in Jan '05....when there was a recent confirmed WB dx of Lyme from August '04 right there in my records?
I was referred to him, as well as a Problem here Rhuemy (Dec '04)after my GP rx'd Doxy 100mg bid for 3 months.
I am now seeing a LLMD, but just curious as to "What was up with that?"
I even asked him...and his reply was, "Well, I think something else is going on here".
I wasn't aware of the ID docs dx until I requested my records for the LLMD, and read it before turning them over to the LLMD.
Anyone see any reasoning with that?
Thanks for any thoughts on this,
-laserred-[/B]
LLMD is the way
lyme came back with a fury.that was 2 years ago.lyme continue's to eat at me.you can throw fibro in there somewhere.
i just wish i could find the correct answer's.my gp is giving me 400mgs of doxy daily.i know that is not enough.
but at this stage,i get what i can....gary
------------------
quote:
Originally posted by laserred:
Hi Everyone,I'm confused....why did/would an (Problem hereID doc dx me) with Fibro in Jan '05....when there was a recent confirmed WB dx of Lyme from August '04 right there in my records?
I was referred to him, as well as a (Problem here Rhuemy) (Dec '04)after my GP rx'd Doxy 100mg bid for 3 months.
I am now seeing a LLMD, but just curious as to "What was up with that?"
I even asked him...and his reply was, "Well, I think something else is going on here".
I wasn't aware of the ID docs dx until I requested my records for the LLMD, and read it before turning them over to the LLMD.
Anyone see any reasoning with that?
Thanks for any thoughts on this,
-laserred-
LLMD is the way
``Regarding Lyme disease, there are two camps in the medical community. Camp A says that it is strictly a bacterial problem, and we don't want to look at any autoimmune aspects. Camp B says that Lyme is easily treatable and, after that, it is an autoimmune problem; but we don't want to try anything to fix it.''
``There is a basis for a third theory.
I still think that Lyme spirochetes cause some of our neurological problems by eating the myelin off our nerve cells. But in January, 2002, I completed reading "Germs" by Judith Miller and others; and now I think a major component of the attack may be similar to autoimmune disease, but it should be called something like "camouflage" disease.
Among many horrible pieces of information, Miller describes the work of the Russian germ warrior Sergei Popov who has defected to the U.S. Popov's most ingenious trick was to snip out the gene for myelin from a human (or other, e.g. mouse) chromosome, and insert it into a virus, for example smallpox, which the Russians made by the ton after signing the 1972 treaty outlawing germ warfare (hopefully without Popov's insertion).
When exposed to Popov's chimera, the test animals (mice) would develop the viral disease. Those that did not die then developed a one hundred percent fatal multiple sclerosis. Popov also inserted the gene into bacteria which gave the same sequence of events.
In a moment of inspiration, Popov discovered he could infect a bacteria such as plague (the black death) with a virus such as smallpox that contained the gene for making myelin. Now he had a 3-wave weapon: Some of the people exposed to the plague bacteria would survive with antibiotic treatment. On dying, the bacteria would release the virus causing, for example, a second wave of smallpox. Those who survived the smallpox would then die of MS.
How does it work? Apparently the body recognizes the microbe with the myelin on its cell wall and produces antibodies for the myelin. These antibodies then attack the myelin in our nerve cells. Because the antibodes are diluted by attacking the host's nerve cells, the microbe has improved its chance of survival.
Could some microbes have developed this talent for picking up host "surface" genes naturally? It would be a most useful adaptation because the host would be firing indiscriminately at the microbe and its own tissues, reducing the probabilty that the microbe would be hit. The microbe has camouflaged itself.
Of course, it would be of little use to a spirochete living in the cartilage of a knee joint to absorb a gene for making myelin, but it would be most useful for it to absorb a gene for making collagen. Such a microbe would also be camouflaged, and the victim would develop arthritis because of his body's indiscriminate attempt to kill the microbe.''
Commentator 1 wrote:
`` "Blebbing" is fascinating, kind of like a jet dropping flares to attract the incoming missles. The blebs are left wherever they were dropped and should be able to continue an antigen response.
This is a play on what you're talking about: ''
-------------------------
ARTICLE from The Scientist, Vol:10, #14, pg.13, July 8, 1996, 1996, By Karen Hopkin
Read the article
``Searching The Surface
... Many researchers believe that the secret to B. burgdorferi's infectivity and inflammatory capacity lies in the interaction of its surface proteins with the host's immunological system.
Yale researcher Stephen Barthold, a veterinarian and professor of comparative medicine who developed the first mouse model of Lyme disease, studies the expression of B. burgdorferi surface proteins throughout various stages of the spirochete's life cycle.
He finds that during the early stages of infection, B. burgdorferi avoids immune detection by decreasing its expression of surface proteins or cloaking its expressed surface proteins under a layer of slime. "It's using some sort of stealth-bomber-type mechanism," he says. Or, using another diversionary tactic called blebbing, the spirochete can pinch off bits of its membrane in order to release its surface proteins.
Explains Barbour: "It's like a bacterial Star Wars defense program," in which released surface proteins might intercept incoming host antibodies, keeping the spirochete safe from immunological attack ...''
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ARTICLE from Infection 2001 Dec;29):315-9, By Brorson O, Brorson SH, Henriksen TH, Skogen PR, Schoyen R., Dept. of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway.
Read the article
``Association between multiple sclerosis and cystic structures in cerebrospinal fluid.
BACKGROUND: The aim of the study was to search for infectious agents in the cerebrospinal fluid of patients with multiple sclerosis (MS).
PATIENTS AND METHODS: cerebrospinal fluid from ten patients with the diagnosis relapsing remitting MS and from five controls without MS were examined by transmission electron microscopy, dark field microscopy, interference contrast microscopy and UV-microscopic examination of acridine orange staining (AO). All cerebrospinal fluid samples from patients and controls were cultured.
RESULTS: Cystic structures were observed in cerebrospinal fluid of all ten patients by AO and transmission electron microscopy. dark field miscroscopy revealed eight cyst-positive patients out of nine. One of five control persons had such structures in the cerebrospinal fluid; this person had suffered from erythema migrans. Spirochete or rod-like structures emerged after culturing two of the MS patient cerebrospinal fluid samples and these structures could be propagated.
CONCLUSION: A significant association of cerebrospinal fluid cysts and MS was identified in this small study among residents in a coastal area of southern Norway. The cysts could be of spirochetal origin. Our study may encourage other researchers to study larger patient groups.''
--------------------
ARTICLE from APMIS 2001 May;109(5):383-8, Gruntar I, Malovrh T, Murgia R, Cinco M., Institute of Microbiology and Parasitology, Veterinary Faculty, Ljubljana, Slovenia. [email protected]
Read the article
``Conversion of Borrelia garinii cystic forms to motile spirochetes in vivo.
Cystic forms (also called spheroplasts or starvation forms) and their ability to reconvert into normal motile spirochetes have already been demonstrated in the Borrelia burgdorferi sensu lato complex.
The aim of this study was to determine whether motile Borrelia garinii could develop from cystic forms, not only in vitro but also in vivo, in cyst-inoculated mice.
The cysts prepared in distilled water were able to reconvert into normal motile spirochetes at any time during in vitro experiments, lasting one month, even after freeze-thawing of the cysts. Motile spirochetes were successfully isolated from 2 out of 15 mice inoculated intraperitoneally with cystic forms, showing the infectivity of the cysts.
The demonstrated capacity of the cysts to reconvert into motile spirochetes in vivo and their surprising resistance to adverse environmental conditions should lead to further studies on the role and function of these forms in Lyme disease.''
[This message has been edited by treepatrol (edited 10 March 2005).]
quote:
Originally posted by GEDEN13:
i just wish i could find the correct answer's.my gp is giving me 400mgs of doxy daily.i know that is not enough.but at this stage,i get what i can....gary
brent.....what is MJ?
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oops!
Lymetutu
quote:
Originally posted by GEDEN13:
i just wish i could find the correct answer's.my gp is giving me 400mgs of doxy daily.i know that is not enough.
At your stage Bb probably makes cyst so something such as flagyl is needed to break them up. Doxy alone ain't gonna do it. You may also want to get yourself and your doc silver literate.
Nothing even comes close to the therapeutic value MJ has on some symptoms such as fibro. I've tried them all, muscle relaxants, oxycontin, etc...If anyone has tried it they will know what I mean. Recommend highly
***** 5 stars
i go to see another orthopedist on monday.(3rd)i am going to try to get him to look in my right knee for sign's of lyme.
i had an open synovectomy 2 year's ago.they scraped(gross i know) my leg bones of lyme arthritis,and removed my synovial lining.
since then ,my knee has become even more painful.i take percocet and use the duragesic patch for the pain.
all my joints are affected(large one's).i keep trying differant way's to get abx.
i do have a pos. w.b from quest.i also have a clincal dx from dr.v.s...(noted head doc who also has lyme).still no abx.
i have seen 2 i.d docs...i would not let them treat paper cut.....anyway,i am not going to let it get to me....gary
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I didn't buy that.
I went with another primary. The second visit he handed me a piece of paper with fibromalgia at the top. He mentioned ME (CFS) on the first visit.
When I told him I didn't have the symptoms listed on the paper he said you have the fatigue don't you and walked out.
His nurse came back in and said he wanted to see me in 6 months.
I thought if I did indeed have fibro and was no longer able to work that was not an acceptable way to tell me.
Somewhere along the line, I ran across Dr. Scott Taylor, DVM. He has lyme disease. He was dx with fibro.
He wrote a report called: Lyme Disease: The Disease of Ignorance.
I took it to my new primary. He said he must be one of those ignorant docs and planned on remaining that way and walked out.
I also brought in my positive western blot from Igenex and told him I had seen a lyme specialist who confirmed I had lyme.
He said they would treat me for normal illnesses and annual physicals but that was it.
He asked how did he know Igenex wasn't a bogus lab.
I suggested he contact the lab and my doc.
No dice.
I didn't buy that.
I went with another primary. The second visit he handed me a piece of paper with fibromalgia at the top. He mentioned ME (CFS) on the first visit.
When I told him I didn't have the symptoms listed on the paper. He said you have the fatigue don't you and walked out.
His nurse came back in and said he wanted to see me in 6 months. This was when I was still trying to find out what was wrong, fix it and get back to work.
I told him I needed to get back to work because if I do not work I do not eat. He said that was not his problem.
I thought if I did indeed have fibro and was no longer able to work that was not an acceptable way to tell me.
Somewhere along the line, I ran across Dr. Scott Taylor, DVM. He has lyme disease. He was dx with fibro.
He wrote a report called: Lyme Disease: The Disease of Ignorance.
I took it to my new primary. He said he must be one of those ignorant docs and planned on remaining that way and walked out.
I also brought in my positive western blot from Igenex and told him I had seen a lyme specialist who confirmed I had lyme.
He said they would treat me for normal illnesses and annual physicals but that was it.
He asked how did he know Igenex wasn't a bogus lab.
I suggested he contact the lab and my doc.
I felt that since he got paid whether he did his job or not...my health was of no concern to him.
I heard that 70 to 80 run through the two medical clinics in town a day from the nurses.
There are two docs. You do the math.
In the ILADS Guidelines, there is a paragraph that states that fibromalgia does not go away unless it is treated with abx in their experience.
There are a lot of labels in the medical field. The bottom line is getting ones health back.
The other two teachers who came down sick when I did were labeled CFS/fibromalgia.
They seem to be OK with this. The one continues to complain about her health but will not see a lyme specialist or get tested.
She doesn't not believe she has lyme disease although she has the symptoms.
Tutu, what I was trying to say is my 2nd time around being tested for FM; I was allowed to lay on top of examining table to be tested for 18 areas.
1st time I had to stand while rhematoligist examined me. When he hit the worst spots, I started falling to the floor due to the PAIN.
Thanks for catching this so I could clarify.
Betty G.
Just wanted to let you know that I recently was in to see a rheumatologist who told me that he thought I probably had fibromyalga also (I think mainly because he couldn't put his finger on anything else based on my symptoms)
I'm so frustrated too! I have a + test from Igenex but none of the "traditional" docs will even consider it. I asked him if any of my symptoms could possibly be lyme related and he told me that because I felt worse on the abx. that it probably wasn't lyme and not to waste my time with the lyme issue.
My husband tells me that he doesn't believe that I have lyme because I'm not debilitated and that most people he's met that have had lyme weren't able to even get out of bed.
I hope and pray that there is more research and information for our children because I pray that all this uncertainty and misinformation doesn't continue.
quote:
Originally posted by KLS:
I'm so frustrated too! I have a + test from Igenex but none of the "traditional" docs will even consider it. I asked him if any of my symptoms could possibly be lyme related and he told me that because I felt worse on the abx. that it probably wasn't lyme and not to waste my time with the lyme issue.My husband tells me that he doesn't believe that I have lyme because I'm not debilitated and that most people he's met that have had lyme weren't able to even get out of bed.
I'm very sorry for gary, kam, kls, all you folks who can't get proper treatment. That's really pathetic. Don't stop until you get treatment!!!!!!!
KLS....Tell your husband I taught school for 21 yrs while having Lyme and babs. Somehow I did it.
Not all cases of Lyme cause one to hit the floor 24/7. Mine made me ill frequently, but I was often treated with abx for sinus infections.
One time, I had constant sinus infections and bronchitis and was on abx more than I was off for an entire year.
Finally, my body gave up. Yours will too unless you get proper treatment.
------------------
oops!
Lymetutu
Thanks so much for the support...sometimes I feel like I'm the only one who really believes that what's going on is from lyme and it's difficult to have the docs not believe you, but even harder when family members just don't understand.
I appreciate the feedback and I plan to continue to keep searching to find a doc that will take me seriously and address the issues rather than send me on my way.
Thanks so much!